Blog
05/05/2011
Dystonia Week, 7 - 14 May
May 7-14th 2011 marks Dystonia Awareness week. And before you ask-it’s not an Eastern European country! Dystonia can affect anyone at any age in any part of the body. New figures released in 2010 confirmed there are now 70,000 men, women and children in the UK with this condition. Symptoms can include severe spasms, pain and involuntary muscles movements. There is currently no cure, but the condition is managed with Botox, medication and sometimes invasive surgery such as a baclofen pump or deep brain stimulation where an electrode is inserted into the brain with a small device under the chest cavity which helps control movements. I was diagnosed with the condition in 1992 after nine years of suffering with neck dystonia and many years with writer’s cramp. My head almost touched my left shoulder and the severe spasms and cramps often reduced me to tears. I have a supportive family and network of friends and never hid my condition away, but sometimes it can be embarrassing when my neck suddenly jerks backwards when I’m out shopping and I can’t do anything about it. Botox has helped me live a ‘normal’ life. I passed my driving test the year after my first Botox treatment and I volunteer with several organisations including the Essex Dystonia Support Group. Dystonia was recently highlighted by Parkinson’s’ sufferer Michael J Fox as he now has this condition and by Joanne Day who won the Friends for Life award at Crufts 2011. To my knowledge no one has died of dystonia but it’s a crippling condition which in children can result in chronic disability and confinement to a wheelchair or bed. Research and awareness are vital. Dystonia is near the bottom of the ladder in terms of neurological conditions. My hope for the future is to get dystonia off the map of Europe and onto the body map. Sharon Cattermole
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